Changes you've made to prevent recurrence

elimar86861

One more thing...a cell needs to go thru' many mutations to become a "cancer."   For most (not those of you who were residing in atomic bomb testing areas) that takes a long time.  Whatever my breast cells have already gone thru, so have a whole bunch of other cells. While I can change my diet to something that supports the health of cells better, there isn't anything that reverses the mutation that has already happened.  I still don't think all the kale in the world is going to undo the first 30-40 years of my life and whatever I did to get the mutations going.  In trying to get some natural Vit. D this summer by getting 20-30 minutes of sun exposure without sunscreen, I probably took a few billion cells to the next level of mutation.  If that didn't do it, getting twice as many mammos in the last two years might have pushed some cells over the edge.  How would I know? 

I'm worried enough because we don't have the medical technology/gene therapy to repair the mutations. Yet.  I'm a control freak who feels pretty helpless really.

Sorry I wrote so much, my brain went a little hyper.  (No sugar invlolved, surprisingly.) 

vivirasselena

I've gone vegan................no meat no dairy.

watch the documentary "Forks over Knives" and it will inspire you to make good food choices

starbeauty

I guess reading these thoughts leads me to a place of moderation... Because there is so little clinical research to support much of any of it... Despite the gobs of money going to the BC cause annually. That said... Then doesn't it simply become a crap shoot for each individual to decide what fits with qol needs and gives each individual a sense of doing something/anything to help themselves avoid getting it back while knowing full well it may be worthless for their type of cancer or their "imbalance"?

SpecialK

starbeauty - yes

elimar86861

Yup!  People do much more crazed (pc=highly individual) things than anything listed here so far,  just for their own personal peace of mind, which in itself is worth something.

It's up to the individual to sort their way thru' the choices, and I think all are striving to make good ones, but they are not all equal~~or~~you could say some shoots are crapier than others.  

Blessings2011

Well, dang.

I just looked at my brand-new case of soy milk, and realized I'd probably have to stop drinking it. And who knew there was soy in fish oil!?!?!?

DH and I eat pretty healthy. No preservatives, minimally processed foods, lots of fresh fruits and veggies....

It's the sugar that is the hardest to kick. After my diagnosis I finished off the Costco-size bag of Halloween candy. By myself. And it was a huuuge bag. But my surgery was sooo far off!!!

I haven't met with my oncologist yet, but if there is a reason to eliminate soy, I'll do it. I can also fall back on some of my WW recipes to eliminate more sugar and fat in my diet.

And - as always - I need to get off my fat butt and walk. I mean, how hard can that be? I should just DO IT, right?

I'm so grateful for this site.....whatever questions I might have, there is always someone here who has gone through it! Thanks, Ladies!

KCandJsMom

Thanks so much for all the responses and keep um coming!!!

Hard to believe that this time last year I didn't even know I had breast cancer and yet here I am putting together my post BC plan! It's even harder to believe that I actually learned more this year (about myself, my friends/family, about what is important, etc) than the 43 years that preceded it. Crazy. Just crazy.

There is no going back now and if I had a choice (I can't believe I'm about to say this...) I wouldn't go back to the preBC dx me, anyways. Is it just me or do you feel like you are BETTER now?!?!?!By better I mean more alive. More aware. More appreciative. Like I'm finally seeing in color now instead of in black and white. I may hardly have any hair on my head, have only 1 boob, can still see the lines from my radiation burns, and my joints ache horribly any time I stop for more than a few minutes. But I am happy - so happy to be alive! The day I started chemo Japan had that 8.9 magnitude earthquake where thousands of people died almost instantly. No chance to say goodbye, or I am sorry, or I love you - just gone. I am not sure how many days or months or years I have left, but I feel like WE have been given a second chance. Every day just means so very much to me!

So I have tallied your comments thus far and have created the following To Do list: Exercise, Eat Organic, Increase Fruits and Veggies, Prayer (love that this was the 4th highest on the list you compiled for me thus far!!!!), and Meditation. High marks also go out to taking a Multivitamin, Calcium, Vit D, and Fish Oil so those have also made the rotation.

Please keep commenting. As Dr. Phil says, I would never substitute your judgement for my own. But I truly believe that as a group you/we know so much more than any one of us does alone.  You know the saying...It takes a village....And this is a wise, WISE village!

Thanks for allowing me a view into how you are living your life these days.Hugs and kisses to you all!

.

starbeauty

KCandJsmom...very beautiful and perhaps the most important finding of all... Simple joy in each day filled with gratitude, tolerance for others and a deep inner peace. Now... If someone could just bottle that.

pebee

KC and JS Mom wrote -

"So I have tallied your comments thus far and have created the following To Do list: Exercise, Eat Organic, Increase Fruits and Veggies, Prayer (love that this was the 4th highest on the list you compiled for me thus far!!!!), and Meditation. High marks also go out to taking a Multivitamin, Calcium, Vit D, and Fish Oil so those have also made the rotation"

Yes, you can do this.  However...... there are women on this list who did all of what you listed and got BC.  There are women who did the exact opposite and did not get BC.  It is a crap shoot.  If you do the above - do it for you.  It may or may prevent a recurrance.  But, if you put your hope into these changes and the BC comes back, then I hope you are not in a world of self doubt.

A very, very, long time ago I smoked.  And I am still partial to the occasional glass of good scotch.  Right now, I could go back to both - it would not change my odds of recurrance....... so there is nothing but my desire not to that is holding me back.

I think people are more likely to make changes if they are sustainable.  If you are not someone who eats fruits and vegetables, likes to cook fresh fruits and vegetables, have a reliable source of good produce (I will leave it at that for the whole local/organic/sustainable conversation), then it will be hard for you to change to this type of eating.  If you are making the change only to prevent possible occurances, then, you may have problems.

Outfield

This has been such an interesting thread.  

Elimar, I realize I didn't word part of my first post very well.  I wasn't specific when I talked about thresholds - I actually wasn't thinking about only breast cancer, but all-cause mortality.  For example, if I pick a goal blood pressure as less than 130/80, it doesnt' mean that someone with an average blood pressure of 129/79 gets a gold star and someone with a blood pressure of 131/81 gets a demerit.  Same for BMI, same for alcohol consumption.  The observed associations don't follow a heads/tails black/white sort of pattern at any cut-off.  It's evern harder to evaluate and express risk for something like diet and breast cancer, because diet is notoriously hard to evaluate and numbers are smaller.  

And it's also true the events that led to a clinical breast cancer started years ago.  But, on the other hand, recurrence risk can be changed by things done after surgery and staging.  Consider chemo for TN or tamoxifen for ER positive breast cancer as examples.  But does taking tamoxifen ensure that an individual woman won't have a recurrence?  Of course not.  

I do find fodder for thought in the research that's there.  There actually are some small randomized controlled trials of things like dietary interventions.  Like for example, here:

http://www.ncbi.nlm.nih.gov/pubmed/17635889 

http://www.ncbi.nlm.nih.gov/pubmed/17179478 

I'm not including these links in any way to use them other than examples of what you can find if you actually look for research.  I'm not going to critique them, but if the intervention were an  a new drug nobody would get it based on only this.  But things like this have been a starting point for me to think about.  I also look at the observational stuff - same thing, just starting points.  But I have to think about the limited information that is out there.  

So overall I don't think it's implausible that there are other things a person could do to change risk of recurrence, but it's damn hard to know what they are.  I think I put in another thread that I would walk learn to walk on myhands if I knew it would decrease my risk of recurrence.  I could probably think of some argument why it would.  So if there's a suggestion something may help, and it isn't likely to hurt, I'll do it.  If a small bunch of women who ate some mushrooms every day had a lower risk of recurrence than those who did not, then I may eat some mushrooms.  If it's something with obvious risk or loss of quality of life, I'm not going to do it.

Oh, forgive me for having been so wordy.  I'm really tired and have a fever.  I hope this made sense.  

I am all for doing what makes you feel healthy and good with the world now. 

 

 

faithfulheart

How about,  all things in moderation,  live, laugh and love alot!!!!!!!!!!!!!!  Trust that we only have so much controll in the end,  I believe it is already written,  not to start a debate on that please!!  It;s just my opinion, take care of yourself,  I do believe you should keep your wait down for all health reasons, but, really at the end of the day, if we spend to much time worried about recurrance, are we really living??  Do what you can and let God do the rest........... I see alot of women here seem to have early dx, hey ladie's thats half the battle right there!!!!!!!!!!!!!!

I went crazy when my treatment was done,  all organic, manic excersise, no wine, I got down to below my pre baby weight, never looked better, But I was not really enjoying my life, I was trying to control my out come. I finally found where I was comfortable, and I am happy with my moderate lifestyle, and I have surrendered  to my lack of ultimate control in this game of life!!!

Cherish everyday,

Blessings to all my sister's!!!!!!!!!!!!!1

mumito

Regular exercise at least 5 days out of 7.I personally joined a gym but they say walking is just as good.

NancyD

Lost a little weight (more to go), eat better, drink less ( but not teatotal), take my AI religiously, added Vitamin D in the winter, exercise when I feel good. that's about it.

jennyboog

Guess I'm playing devils advocate too, all this is good and I hope it works for us all, at least we're trying right but I've wondered if it would even matter with someone like me....BRCA+.

kathleen1966

I can't say that I have done anything all that different.  I am overweight and continue to be overweight.  I had lost about 25 pounds right before diagnosis but have gained 15 of it back. Though I am tall and large boned and I don't actually look obese, just "chubby" I am considered obese on the charts.  I exercised all through treatment but didn't lose one pound.  Then after treatment I got side tracked with my son having a broken femur, then my other son having Lyme's disease, then me having cold after cold after cold and I got out of exercising (hated every minute of it by the way).  I don't drink but I didn't drink before and I have never smoked. I eat mostly organic and did before and I no longer drink juice and try to stay away from sugar. I often feel as if being overweight may have contributed or been a risk factor to the cancer but I have read that this is only true in post-menopausal women and not pre-menopausal women and I am also hormone negative and weight is related to the hormone aspect of breast cancer so I feel that it couldn't be because of this. But I have not made major changes though I feel I should be doing this. I took a spin class on Monday and almost died though...chubby me in a room full of beautiful, in shape women and men...I'll go again this Monday! 

elimar86861

Outfield,  Thanks for putting up a few studies.  I was wrong to state that studies on diet are not out there, when they are; but was meaning something with definitive info.  Of the two you posted, the first does not mention if there was weight loss, while the second one mentions moderate weight loss.  Getting to and maintaining a healthy weight IS something the ACS supports.  I always thought that was because body fat can produce some estrogen.  (Again, I am not sure if that is such a concern for TN women???)   [ETA:  Had not read Kathleen's post above which states related info.]

I'm waiting right along with you to hear of more definite things that could reduce my risk.  Remember when Vit. prevented/cured cancer?  They seemed so sure of that one.

If you want to count rads and Tamox. as a "change" I made to prevent recurrence, don't think I don't question them too.  I wonder every day if I would have fallen into the 70% who would not recur even without rads?  I wonder i I could do without the Tamox. too?  But since I cannot know, I bet against myself and took out the insurance policy of doing/taking them.  If it turns out that I remain cancer-free, will I give them credit?  How can I?  There is no way to know on an individual basis.

I'm happy that people can do all kind of things and remain cancer-free.  I'm just coming from a standpoint of trying hard to keep a straight face if I hear someone say flax seed oil and cottage cheese (for example) kept them cancer free.  That's about the time I want to start touting the Cheetos.  (How bizarre if there were any truth to that!) 

Moonflower83

Hello,

can you tell my why some of you don´t drink coffee?

I´m newly diagnosed, now getting chemo and my onco told me to drink coffee or black tea in the morning  because of my circulation ( I hope it´s the right word, I´m from Germany ;-)  ).

Outfield

Elimar, get you there about the cottage cheese.  I am tired of having alternative treatments pushed on me by people who's mother lived 13 years or whatever.  

I think we're saying the same thing about things like tamoxifen and XRT.  Really, who knows what caused what in an individual person?  Maybe I won't have a recurrence because I did a whole bunch of awful treatment including injuring my whole upper L thorax with radiation, and maybe I will anyway.  I can't predict an individual future; it's all just probabilities and works better if you want to predict the x of 100 who will survive 10 years.

And the flip side of attributing success to one factor is placing blame if things go badly.

So in the absence of good solid info, I advocate doing what makes you feel good and feels like the right choice to you.  Nobody can really refute or support most of the things mentioned here, so if they improve quality of life I am all for them.

About coffee - I was never told not to drink coffee.  I had loved it, but hate being a slave to the caffeine addiction.  I totally lost my taste for it during chemo.  Now drink about one cup per day.  I think it's on a "bad" list if you're follow an alkaline diet, which I am not.  There's observational evidence (whoah, here we go again!) that coffee may decrease the incidence of some diseases, perhaps even BC, as well as all the negative stuff.  I have to say, I've never read anything about coffee that seemed like strong enough info to do anything different than what I was doing, which is following my own pleasure. 

Kay_G

I saw a study that said coffee reduces the risk of recurrence if you're triple negative, but doesn't really do something one way or the other for ER positive. There may be other info out there as well. I completely agree with the miracle supplements or foods. I definitely think moderation is the way to go. Eli, you changed my mind on alcohol. I guess if it causes hot flashes, it has properties that react with estrogen. Since I don't drink much any way though, it doesn't mean anything to me.

ck55

Hey, what is the deal with cottage cheese? I have never heard this one! I eat it every morning with fruit mixed in, love it. Is it suppose to be some type of risk reducer?

If so, perhaps it will offset my drinking and lack of exercise!

Cyndi

elimar86861

That's cottage cheese AND flax seed oil.  The Budwig Diet.  Google it.  It's all in the electrons, baby!

Moonflower83

Thank you for the information about coffee! I love coffee and I can´t imagine a life without it.

AnacortesGirl

It has been very interesting reading these posts.  I'm torn about adding my comments - I don't want to start an argument.  But I just want to add my viewpoint in case it resonates with other ladies.

I guess I'm too much of a skeptic to follow much of the nutrition advice.  I've seen too many years of flip-flops by the nutritional community.  One that stands out in my mind was the evil of red meats back in the 70's.  I would watch my FIL (now an ex FIL) sit down and eat his meat, potatoes, big glass of whole milk and rarely touch any other vegetables.  He was a rancher and was doing his part to support the beef industry.  According to the studies coming out at that time he was a time bomb.  The guy is now 83, still ranching, and still skinny as a rail.  That's just one of my observations that we're all different and there is no such thing as an "average" human being.

My point in this story is that I have taken the viewpoint that I do things because I want to and not out of fear.  So I exercise because the stats show that there is benefit and it is something that makes me feel healthier.  I don't avoid sugar out of fear that I might be eating something bad.  If I had weight issues, diabetes or some other reason to feel that avoiding sugar was a positive thing to do, then I would put it on the list.  I have enough fear already and that is one of the things I'm trying to eliminate.

Kay_G

Anacortes, thanks for your comments!  I think we're all old enough to disagree about some particulars without resorting to fighting.  At least I hope so.  It is good to share views.  I think you make a good point (Elimar's point as well).   The things I'm doing I am not doing only to prevent reoccurrence, but for looks (I've lost 25 lbs and I like the way I look now) and for general better health.  And I think that general better health has to be somewhat better for reoccurence.  I mean even if it happens, you'll at least be able to tolerate treatments better and feel better during them.  I think this is a great thread and will remain friendly.  I really hope no one is afraid to post their thoughts on it.

My grandfather was similar to you fil.  He was a big meat eater (although he did eat vegetables and fish as well, I don't think there was anything he didn't eat), smoked a couple packs of cigarettes a day, had at least one beer every day of his life, a big lunch meat sandwich every day, and a large bowl of ice cream every night, was skinny and never had a problem with cancer.  But he did have a stroke at 78. 

Claire_in_Seattle

Kay.....with you on the "looks" part.  I exercise for all the other benefits too.  These are great body, working brain, feeling great, and terrific skin.  I cycled all through treatment.

One of my best stories that illustrates all these points is the 30 mile training ride I was doing during radiation.  I was wearing my wig under my helmet, so wasn't obvious that I had anything amiss with me.  Anyway, I rounded a corner, and a guy on the passenger side of a pickup truck said: "nice ass".

Made my day.

everyminute

Before I was diagnosed I ate well, ran, watched my weight to avoid "getting old" now I do it so I can get old.  Go figure.

I exercise 6 days a week , I am pescatarian (eat fish but no chicken or meat), limit sweets, watch my weight , body mass/body fat, etc.  I did chemo, radiation, tamoxifen, now arimidex, zometa, had a bilateral mastectomy and total hysterectomy. I laugh every day. I sleep as much as I can (taking in all the above into consideration).

I don't know that any of those things are a cure, I am hoping that the combination is.  I realize that there is no easy answer - if there were, we'd all be cured and on some random recipe website instead of here - but I do what I can and live as though it's enough.

pip57

I'm a 'pescatarian' too...I didn't know I had a label.   LOL

Here is my theory.  I have seen too much evidence that our cells are dramatically effected by the bombardment of molecules that come into contact with them on a daily basis.  Some of those we can control, others we cannot.  Therefore, I chose to have as much control over the ones that I can. In the end, my hope is that a better lifestyle may buy me time in spite of what my genetic makeup has pre-determined.  At the very least, I feel sooo much better when I treat my body with respect. 

elimar86861

Kay & claire,  You two beat me to the vanity reason of staying fit.  My exercise is to fight the battle of the bulge because I LOOK better without that "muffin top."  I do get more energy, so it's not all superficial.

A-Girl,  It's important to get all opinions out for consideration.  When things get discussed, hopefully individuals can come to a better clarity on their views.  Although I am skeptical on anything that we do actually preventing cancer or recurrence, I am mindful of what the ACS uses as their guidelines for risk factors, and do try to keep up with the new ideas out there because prevention will happen in one of these centuries.  (Like how some people throw away their junk mail without looking at it.  Let's just say I do go through it.  I still might toss it, but every now and then I might stick a refrigerator magnet on something to keep it for a while.)

Also, if whatever a person is doing leads them to better overall health, I guess that could, in turn,  lead to someone without optimum immune function to improve upon it,  So maybe, just maybe, maybe, maybe, their own bodies will provide a better defense against all attacks, including cancer.  I'll concede that big maybe to kay and the rest. But it might just be the constitutions we are born with.  I don't mean like BRCA genetics, but some just seem to be healthy as a "hoss" no matter what.  Like those pops and grandpops that were mentioned.

climbergirl

I was mindful of health in the first place. No red meat, Less Alcohol is a good idea, MORE sleep, excercise always. I have ahd a yoga practive long before treatment. The biggest change is keeping to a daily meditation practice! mMeditation has been proven to strenghten your immune system and helps chronic illness. I also think that BC can be linked to traumatic events like family deaths and the like...you hear about that quite a bit. Was the case for me.....

Check out Jon Kabbat Zinn teaching meditiation at Google :

 http://www.youtube.com/watch?v=3nwwKbM_vJc

elimar86861

A P.S. TO THE THIRD PARAGRAPH IN MY POST ABOVE:

I had the opportunity to speak with a scientist in the last few days about the "improve overall health, improve immune function" thinking, in regard to cancer.  The comment I got was, that people may have perfectly functioning immune systems but what was "broken" was the body's recognition ability.  The immune system (t-cells, macrophages, etc.) does not attack cancer because it does not recognize it as invasion.  With genetic engineering, I think there were some laboratory successes in getting cells to recognize and attack cancer.  I don't know that a food or a behavior would even make a difference when it comes to our bodies recognizing cancer cells.